Arachnoiditis: Looking to talk with others

It's the combination of pain meds (5mg oxycodone twice a day), plus benzodiazepines. I got one of my former PCP to prescribe .50mg Xanax daily & pain & NP almost flipped out. She received a letter from DEA...and that was end of Xanax. I have tolerance of an elephant & never had any reaction. As former RN, do not want to end up in some crappy psych ward, on a hold. I also use some THC gummies, no vaping, or smoking. Since i am poor, i find daily use of weed can start adding up. In AZ, as u know, we now have both recreational & Medical. However you're on your own, trying to figure out what works. My symptoms seem to vary a lot & sometimes i think i must be crazy. Sure some doctors feel the same, so i don't always mention everything.. Here, in AZ, couple of different pain groups, but honestly, i think , most pain management is a mill. Maybe it's just that they take one look at my hardware & have nothing much to offer. No panacea, for sure, but wish for a little empathy! I am told my hardware is fine & i don't have stenoisis, etc....just Arachnoiditis. Arachnoiditis pain, far worse than prior spine pain. Nerve pain down all for extremities sucks Wish i could trade Az for Florida. Lived by beach in Calif. most of my life. Florida looks pretty in winter. I am having brain fog.....hoping it's just lack sleep

Yes it legal here but I stopped smoking 7 months ago bc of pain management being in TN. Not legal there. Bout ready to go back only for relaxing my pain to sleep. That's when I used it anyway. Nightly. The Dr's at pain management says to stop and they would help . They didn't. Needless to say.

Hi,I was diagnosed with Arachnoiditis when I was in my 50s now I'm 71.Just this last yr a dr miss diagnosed me saying that I have a tumor inside my spinal cord. They operated and it was Arachnoiditis. They put a patch on the spinal cord to give room for the nerves all sticking together.Im not on pain meds.I take an ibuprofen when I need to.I feel lucky so for.

My pain wasn't too severe, for a long time. I do not have any history of addiction, or abuse. Just distaste or narcotics, as they give me horrible constipation issues. I am now on Oxycodone 5 mg three times a day. & was given patches of Buprenorphine 7.5 mg . However, the patches gave me severe gas pains & more constipation. tried twice, but gave up. I now have such severe pain, i can't sit up. I am unable to function. I am supposed to get a right shoulder ablation next week & need to talk to someone in pain management, as i feel like i am being knifed in low back, sacral area. Pain management telling me i can't see NP, same day i get ablation. Tried telling them, that i can't get out of bed, let alone, additional appointments. They R telling me that this is Medicare dictating the rules. Do u know what the DEA allows PM docs to prescribe? I am allergic to Morphine, but Dilaudid works. How many months of agonizing pain, does it take, before i can get adequate pain relief?? Ridiculous that we have to go to the ER. ER doctor, last time, said i was drug seeking!! Severe, constant pain, started about 6 weeks ago. Before this, i only had episodes of horrible pain, which made me go to the ER for 2 to 3 days, on large doses of Fentanyl My AA pain moves around. Don't think most NP, even in pain management, know much about Arachnoiditis. This isn't pain compatible with living. See new pain doc, on the 9th, about pain pump

U are lucky. Every case is so different. I dodged the bullet for awhile. But now have severe, unrelenting pain. Can't sit up, or get out of bed too much. Your details are harrowing, being misdiagnosed that way. Hope you continue to be pain free. I am at the point, that i need to go to ER for large dose of Dilaudid ER's here, are so over crowded & back pain is not considered an emergency, so you go to the end of the line & sit in waiting room for 6 hours, before getting seen

That is horrible. Yes I feel like I have been lucky with pain.My left foot is not working like it should but I feel very lucky so for.

I have been diagnosed with AA and trying to learn what I can about the condition as my attending physicians know little more than I presently do. It seems I have all the typical symptoms and have been put on pain management. The last couple months my hands, especially my two index finger’s, have been hurting and constantly sore feeling. My neurologist feels that this can’t be caused from AA since the diagnosed area is around 3rd and 4th lumbar vertebrae and she doesn’t feel it can travel up the spine and out to upper limbs. Curious if anyone has experienced similar issues.

My symptoms are constant pain in my lower back, burning sensation down both legs especially prevalent in feet. My feet sometimes feel like they’re going to break with every step. I have stabbing feeling in thigh muscles especially my left side along with burning, aching in buttocks again more so on left side. The hands issue started a couple months ago. MRI was done on my cervical spine last week and I meet with neurologist next month for follow up and nerve conduction test. She obviously wants to rule out neck issue. Again she doesn’t feel AA can travel up spine and out to upper extremities. Five months ago when first diagnosed I was put on pain management consisting of gabapentine, duloxitine, Tizanadine, Baclofin and, last month, Tramadol. Still in constant pain.

Archie I do have constipation from opioids. But now i seem to having bowel incontinence (not all the time) My spine DR said it's not from my hardware or back , but he said it must be my arachnoiditis. So now i am going to look into this issue. Certainly, not dinner table conversation, but it cab make any social life almost impossible

I had a laminectomy with fusion of L5-S1 in 2017, laminectomy of L3-4 in 2019, fusion of L3-4 in 2021 and finally a fusion of L-3 down to S1 in 2023. I believe my arachnoid was compromised in 19 as I awoke with issues in my legs that were not there prior to that surgery. The first mention of arachnoiditis was by radiologist following a MRI done in April of 2024. Two neurosurgeons and my neurologist concurred with that diagnosis and started me on pain management in May of 24. It’s been a lot to soak in to say the least and I know I haven’t begun to understand what’s in front of me.